Nancy-
You know, I could give a lot of information about TS, but not sure how much you want? So I'll just give what I think would be helpful.
For us Tourette Syndrome was manifested around the age of 8-1/2. A doctor first suggested it, and I brushed him off, thinking that TS was kids who yelled out swear words randomly, I had no idea that that was only in rare cases. It wasn't until he was almost 10 and getting frustrated on a daily basis at school with kids telling him 'you are so annoying' 'be quiet' etc, etc, and finally hearing that he had been sent to a different room to take tests because the kids were so disturbed by him. At that point I started reading a little, and trying to figure out what to do.
There is no cure for TS at this time, so all the information wasn't very encouraging. The medication had a lot of side effects that I felt would change his personality too much, and so opted for the lowest dose of one particular drug Guafacine.
When we go to church functions we usually sit in the back because his noises are so persistent, it's hard too to go to concerts, and sometimes movies. People think he can control it, and make it go away if he tries hard enough, but really it's like trying to hold back a sneeze, it just builds and builds until it's huge.
You can give yourself a TS scenario by doing this activity. Try to write the pledge of allegiance in about 2 minutes, but instead of writing like you usually do you need to erase every 3rd word and rewrite it. Also every 5-10 seconds tap your pinkies on the table, and then see if you can do it. It's not as easy as it sounds.
In addition to tics we deal with compulsiveness, and obsessive behaviors as well as a bit of a delay in motor skills. This makes him less athletic, and socially unaware at times. It's coming, and he understands more now than he used to, but it's been really slow to come.
We have spent countless nights comforting him when the tics are so bad he can't stop jerking long enough to fall asleep. Or when he has such severe pain from a tic, but can't stop doing that particular tic. Really you just have to survive through the tough times, because there are times where it's fine. Like right now we are in a really good time, and so we hardly notice it. But it always comes back, and sometimes with a vengeance, so we live, learn and pray that next time will be a little less, and we just love him no matter what.
Johnathan just needs to be treated like any other kid. And hopefully people can be tolerant when they don't understand his behaviors. He isn't perfect, but he isn't a troublemaker. He's smart, and sweet and loves people. Anyway, I'm off the point, but he would do anything in the world to help anyone who needed it.
So how's that for a novel, huh?
Have a good one.
Crystal
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About two months before my son was born I had a dream that I was speaking to a child in sign language. The day the agency called to say he was born they also said "he was born with a cleft lip and palate, do you still want him?" We were shocked and stunned. Do we still want him? He was dreamed of and loved before he was born. Of course we wanted him. I had no doubt he was my child. Of course I wanted him. I was prepared and ready to speak with my hands if I needed to tell my boy I loved him.
Levi's first surgery was at 4 months of age. During that surgery he needed to have his lip repaired, tubes placed in both ears and several other little procedures. Over the past 14 years he has had 12 more surgeries. Some more serious and traumatic than others- but all necessary to help him lead a more productive and normal life style.
Levi has other challenges. He is autistic. Autism is a puzzle. Personally I do not believe Levi 'became', 'changed into' or was 'sickened' into autism. Levi was born with some of his eccentricities. He never liked the baby swing. He never allowed his bare feet to touch the grass. By the time he was 4 months old he was able to completely undress himself by squirming out of his clothing.
Levi is sensitive to noises, the way clothing feels, unfamiliar situations and perseverates on super heroes, monsters and beautiful women. Levi has a habit of touching interesting things. Exploring things he finds interesting with his fingers. He has difficulty navigating social situations. He wouldn't know a bully is picking on him~ he might think the bully is starting a real conversation. Levi could easily put himself in danger by not perceiving and interpreting social intricacies and cues.
Levi is rare among autistics. He has a wonderful sense of humor and loves and "gets" word play. He is also very affectionate. I truly believe this in a direct blessing and gift from God. He knew that I would need affection from my child. Levi gives and can receive wonderful hugs.
He is also very bright. By 2nd grade he was reading dinosaur names 30 letters long. Levi has a photographic memory that he uses when he chooses. He can quote from anything he has read that interests him.
What I wish people understood? We all have disabilities. It's just that Levi's are more obvious. If you are a store keeper, don’t put bright shiny expensive baubles where they are easily touched by children who might find it interesting- DUH! Any child may want to touch it, mine truly has a 'need' to touch it and lacks the control to stop that impulse. It is okay to ask Levi questions about himself. It is okay to draw limits and please tell him when something is not socially acceptable. Please remember that he is also on a journey. His path is more challenging but no less important. I may not have to speak to Levi with my hands. What a blessing it is to listen to him with my heart.
Nancy, I hope this is okay.
Love,
Tamera
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Nancy-
Dustin was five years old when we arrived here. Basically, he’s autistic, though there is some mental retardation.
As for his past accomplishments, he served a mission at the Kennewick Bishop’s Storehouse. He packed produce and other items for needy families during his mission. The missionary couple that supervised the facility were very pleased with his work. He’s my obedient soldier.
He has played piano for sacrament and recitals. He still has piano lessons and hopefully we will branch out with other instruments.
Dustin is a member of our Cultural Presentation grouped titled “The Many Feathers” performers. He performs native dancing. He has full regalia and enjoys sharing his culture.
Where ever we go Dustin goes. He’s seen “CATS” three times, the Yakima Symphony, “The Nutcracker” every other year—including the Russian version, SLC General Conference, Priesthood meetings at the Marriot Center as well as local, Antique Car Shows (which is one of his favorites). Met Lou Ferigno (the TV Incredible Hulk), Pete Rose (Baseball Player), shook hands with Dallin H. Oakes, Wes Studi (Indian actor “Last of the Mohicans”)BYU plays and productions, Utah Jazz Pre-game practice session, been to Disneyland/Universal Studios twice, most everything Seattle can offer, and traveled extensively most of the states west of North Dakota. That’s just a small part of where Dustin has been and done. I believe exposing him to every possible opportunity that any person of his age could have, has made Dustin more aware and feel accepted. He knows he has a place and that he is valued.
Dustin’s home life has been treated with fairness. That means he gets to make family choices as well as carry out chores. Dustin is in charge of heading our FHE. He opens it, assigns the prayers, songs, and closes it. He also has given FHE lessons as well. I believe that is one of his favorite things to do in the week. Every fast Sunday, those who haven’t borne their testimony in church have an opportunity at our home. Before we pray to break the fast, we have a testimony meeting. Dustin has always bore his testimony every fast Sunday.
Every night he makes sure we have our family prayer.
He is very diligent to oversee proper usage of media. If the television is on and there is an inappropriate commercial, he will stand in front of it so no one can see it. And if there is a movie that may have an inappropriate word or phrase he holds the remote control to mute it. I enjoy the times when it’s getting late during the day and some member of the family is not home, Dustin will inquire where they are. He is well aware of being home on time. Dustin needs order in his life and dependable schedules. Church is a must to him. He knows where he should be and also what not to do on Sunday.
I truly believe that Dustin has been the catalyst of spiritual motivation to our family. His innocence, gentle mannerism, and obedience have been a standard in our family. His physical stature is comparable to his spiritual stature. I know he was put in our family for good reason. He is the cornerstone of our family puzzle. We may stumble or stray away from our proper puzzle position, but Dustin is firm in the simplicity of gospel standards. At Dustin’s age, what more would I want than a son who honor’s his manhood, with what our general authorities advise “gentleness, compassion, and sincere love”—I love my little boy.
I know this was long, but you can edit. I appreciate your interest—you are very kind and thoughtful.
Nancy,
Yes, I would encourage members to greet him. He needs more involvement. He’s here with me right now. Everyone’s busy, so he’s in my office until Brandon gets out of class. We all share Dustin.
Thanks again,
Judy
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Dustin is 24. Levi is 14. Johnathan is 11. All are blessed with living angels as their Mothers.
